August 3, 2013 at 4:08 am #74206heatherMember
I just read up about your transplant! He doesn’t give up does he!! I am so thrilled for you! I thought my husband was young at 44 my goodness your just a baby dealing with this!! I pray you stay cancer free and Dr. Javle showes us those pics!! LOL
Are you still in Houston now?
here is my email
email@example.comAugust 2, 2013 at 9:35 pm #74205tiff1496Member
Another vote for Dr. Javle at MD Anderson.
I could post stuff all day about why I love him. He sent me an email after my surgery and said he can’t wait to see pictures of my grandkids.
He works with doctors at MDA and at other hospitals in Houston. He sent me to Methodist for my surgery, because he knew it was what I needed.August 2, 2013 at 3:16 am #74204heatherMember
Dr Javle Md Anderson Houston Texas
My husband was diagnosed in Nov 2012 Our local oncologist recommended we go to MD Anderson and our goal was liver resection and being told it could not be done now It can! It doesn’t happen to everyone and of course we hope it will be done without any problems. But he will keep fighting! Even when were down he picks us back up…he is very quiet, very calm but we really like him.
He told my husband If you just do chemo you have a year and that is unacceptable and he was ready to fight with us!
Good luck to you,
HeatherAugust 2, 2013 at 2:43 am #74203marionsModerator
Jason…I forgot to mention the member established link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126. We are in the process of streamlining the link hence, for the time; it is a bit lengthy and a bit disorganized. Nevertheless, all information comes from our members firsthand.
MarionAugust 2, 2013 at 2:22 am #74202pattimeltParticipant
I have had some problems because of my HMO insurance but I did have an authorization to see Dr. Seery at UCI for a consultation. She was on top of treatments for CC and is helping me pursue a trial for my CC. This is in Orange County in So Cal.August 1, 2013 at 7:04 pm #74201gavinModerator
Can’t give a personal recommendation myself, but how about trying this database from ASCO?
Dunno if that will be useful or not but thought I’d post the link just in case.
Hope you get one sorted soon,
GavinAugust 1, 2013 at 6:20 pm #74200marionsModerator
Jason…UCSF sees a high volume of CC patients as does USC (a bit farther) Some medical centers conduct internal studies which also may be of benefit.
MarionAugust 1, 2013 at 5:43 pm #8691jscottMember
I think the oncologist that I want may not exist, but I thought I would ask anyway.
My wife and I are not really happy with our current oncologist, and are looking for one with the following characteristics (off the top of my head anyway):
-Knowledgeable about CC
-Up to date on the latest standard treatments AND available clinical trials
-proactive (not reactive!) in suggesting treatments. I hate being the only one working on options.
-Willing to think two or three stages ahead and plan accordingly (e.g. our goal is resection, to get there we are going to do A, D, E. We are not doing A, B, C because while that may work ok it makes resection less likely…or whatever)
-Willing to mix and match standard treatments and clinical trials as necessary.
-Willing to think outside the box and be both aggressive and conservative when appropriate.
-Good ability to communicate options + rationale
Anyway, if anyone has a great oncologist that they love and fits some/all of the above, please let me know.
PS we are on the west coast, but we are willing to go anywhere to consult with the perfect oncologist.
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